Health Literacy and Numeracy: Workshop Summary (2014)

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3 Numeracy Demands, Assumptions, and Challenges for Consumers T he presentations from this panel address the numeracy demands on patients and consumers made by the health care and health insurance systems. The first speaker was Lynn Quincy, who spoke about the challenges people face when choosing a health insurance plan. Quincy is a senior policy analyst for the Consumers Union, the policy and action arm of Consumer Reports. The second speaker on the panel was Andrea Apter, a professor of medicine at the University of Pennsylvania. Her presentation discussed the role of numeracy in understanding health care and medical treatment. OVERCOMING CONSUMER BARRIERS TO SHOPPING FOR HEALTH INSURANCE Lynn Quincy, M.S. Senior Policy Analyst, Consumers Union Consumers Union carried out consumer testing of the new health insur- ance disclosure requirements in the Patient Protection and Affordable Care Act (ACA), Quincy said. In that process they learned a great deal about how people are struggling with this issue and the challenges for people trying to make sense of this information. Her presentation is about the numeracy issues involved in shopping for health plans, Quincy said. People dread shopping for health insurance because they do not under- stand the product, she explained. This is an important barrier for people 29 

30 HEALTH LITERACY AND NUMERACY who are beginning the process of purchasing insurance. Yet they realize there are important health and financial implications for them and their families, which increases the stress associated with purchasing health insur- ance. In addition, consumer testing showed that people have little trust in health insurance companies, another source of stress in the process. Consumers Union research showed that the primary reason why people cannot determine which plan is best for them is that they are confused by the cost-sharing terms, Quincy said. There are a number of numeracy components to this issue for consumers. Consumers are not sure of the defi- nitions of terms such as “deductible,” “out-of-pocket limit,” and “annual benefit limit.” These are complex concepts on their own, but in the context of individual health insurance plans, the consumer also needs to understand how they work together. For example, does the copay count toward the out-of-pocket limit? The consumer needs to know the answers to questions like this to be able to choose the best plan for his or her situation. Quincy said this task is nearly impossible for consumers at the point of shopping for a plan. She illustrated the point by giving an example of the cost-sharing term “coinsurance.” There are three distinct issues surrounding coinsurance for most consumers. First, understanding the meaning of the term and its implications is difficult for some consumers. Many are confused about who is paying the indicated percentage, particularly if that number is at the extremes such as zero percent and 10 percent or 90 percent and 100 per- cent. Even when this information is provided, the consumer has a difficult time understanding. Second, how is a percentage calculated? This is a very challenging, if not impossible, task for many consumers. Quincy recalled one consumer who could not calculate 70 percent of $1,000. The consumer said that it was “about half.” She continued to answer that the percent- age represented half even when the number was changed. Calculating and applying percentages were beyond her math skill level. Finally, to what number does the percentage apply? Even those who were proficient with percentages could not answer this question because the number is never given. The percentage applies to the “allowed amount,” but this amount is never shared with the consumer. Thus it is impossible for the consumer to know his or her obligation in advance. As a result, even the consumers with the highest numeracy skills cannot make well-informed choices. Quincy said that for her this raises the question of how things can be made better for the consumer. Her first recommendation is to conduct consumer testing to learn what the challenges are for consumers operating in this environment. Consumer testing provides information for the path forward. After learning what the barriers and challenges are for consumers, Quincy recommended the following steps: 

DEMANDS, ASSUMPTIONS, AND CHALLENGES FOR CONSUMERS 31 • First, improve the product as much as possible. • Second, improve communication about the product. • Third, educate and activate consumers. In the context of health insurance, improving the product means simplifying it for consumers. The ACA accomplishes some of this, Quincy said, by stan- dardizing the out-of-pocket limit so consumers do not need to be aware of exceptions, and the term means the same thing across plans. Standardizing products is very helpful because there are fewer things for consumers to track. Some states, such as Massachusetts, have gone further and standard- ized the benefit design for a given tier or service. Consumers do not have to compare factors such as copays and coinsurance because they are identical, so they can focus on premiums and quality measures. Communication about the product can be improved in several impor- tant ways, Quincy said. Consumers will always use cognitive shortcuts to make decisions; proactively developing cognitive shortcuts is one way to help them make informed choices. For example, showing the consumers the estimated cost for common health care needs such as having a baby, treating diabetes for a year, or treating breast cancer can have an enormous impact on their perception of both health care and health insurance. Further showing what an insurance plan will pay versus what the consumer will pay is also a powerful tool because it does the math and eliminates some of the confusion about benefits and consumer obligations. Consumers Union research detailing who will pay was very important to consumers, who often thought of insurance as prepaid health care and did not realize that the insurance company would bear some of the cost. Presenting information in ways that are clearer to the consumer can help overcome some of the numeracy barriers and remind people of the value of insurance. Another example is the plan comparisons associated with the Consumers’ Check- book Guide to Health Plans for Federal Employees and Annuitants,1 which allow individuals to compare various components of health plans and customize an estimate of average yearly cost. Such information empowers consumers to make better decisions. Quincy concluded by saying she believes that the challenges can be overcome and that the research and knowledge exist to give consumers bet- ter tools that will allow them to shop for health insurance with confidence. This can be accomplished through consumer testing and application of that knowledge. 1 The Consumers’ Checkbook Guide to Health Plans for Federal Employees and Annuitants is an online tool that allows federal employees and retirees to compare health insurance plans offered under the Federal Employees Health Benefits Program. 

32 HEALTH LITERACY AND NUMERACY NUMERACY IN HEALTH CARE: A CLINICIAN’S PERSPECTIVE Andrea J. Apter, M.D., M.Sc., M.A. Professor of Medicine, University of Pennsylvania Apter said that she approaches numeracy in health care and health decision making from the perspective of the clinician. Many procedures are involved in numeracy. The hierarchy of numeracy skills is organized into overlapping categories by level of difficulty (Golbeck et al., 2005). This hierarchy is important because it provides the complete picture of numeracy concepts. Basic skills, the first category in the hierarchy, concern the ability to identify and read numbers. The next category involves computational skills, meaning the ability to do counting and arithmetic procedures. Next in the hierarchy is the category of the more difficult analytical skills: inference, estimation, proportion, percentage, frequencies, and basic graphs. Apter believes that analytical skills play a large role in health care and in clini- cians’ directions to patients because these skills enable patients to interpret information. The final category in the hierarchy is statistical skills, includ- ing probability, statistics, error, and risk. Statistical skills allow patients to compare things and understand probability, which are important concepts in health care. Patients encounter all of the concepts involved in numeracy when they receive care, follow treatment plans, and pay for medical care. Much of chronic disease care is based on informing patients about prevention and risk, which requires an understanding of statistics and prob- ability, Apter said. A number of tasks are involved in managing a chronic disease, and numeracy skills are required for all of them (see Box 3-1). First, BOX 3-1 Some Tasks Involved in Managing a Chronic Disease • Understand the disease • Participate in the development of a management plan • Follow the management plan • Monitor symptoms • Use measurement devices and record readings • Take medicine as prescribed • Note changes in status • Present the story and exchange information with the clinician SOURCE: Apter, 2013. 

DEMANDS, ASSUMPTIONS, AND CHALLENGES FOR CONSUMERS 33 patients must understand the disease itself, along with the symptoms. This often entails understanding frequency, trends, and decreases and increases in severity, all of which are numerical concepts. Apter added that patients must also participate in the development of a chronic disease management plan, which is often complicated and involves a variety of numeracy skills. Such skills are also needed to follow the management plan; for example, patients must monitor their symptoms. To do this they may have to use measurement devices and record and track results, such as peak flow meter readings in asthma care or blood glucose measurements in diabetes man- agement. They also need to be able to note changes in their health status and make judgments about whether those changes are significant. Most importantly, Apter said, patients must present their history to the clinician and be able to participate in a conversation about their care. Apter showed an example of an action plan from the National Heart, Lung, and Blood Institute that illustrates the complexities that patients may face (see Figure 3-1). The action plan is based on the concept of a traffic light—green means the patient is doing well, yellow means that symptoms are getting worse, and red means the patient must take action to improve their symptoms. The action plan requires that medications and dosages be recorded. In following this plan, patients may need to understand frequen- cies, trends, and variation, and some analytical skills are required. Patients are also asked to measure and record their best peak flow on the action plan. They also must understand what is 80 percent of their best peak flow and the range of 79 to 50 percent of their best peak flow. These measure- ments are indicators for patients to use in tracking the severity of their asthma symptoms. Clinicians may also ask patients to graph the results of these measurements taken over time. Yet patients may not have the skills to understand and participate in this action plan. Another typical situation that tests patients’ numeracy skills, Apter said, is discharge instructions from a hospital or emergency room. For example, a man who was hospitalized with an exacerbation of chronic bronchitis was given a pill bottle containing prednisone tablets when discharged. Each tablet was 5 milligrams. The man was told to take 30 milligrams, requiring him to solve the problem of how many tablets to take. This is not an easy problem to solve for many people, particularly in a stressful situation. Another example is of cancer patients who are confronted with the standard gamble problem. The standard gamble concept is intended to help patients and clinicians discuss preferences in the context of cancer diagnosis and treatment. A person is asked to give preferences for treatment by stating whether he or she would rather remain in a state of ill health for a period of time or undergo a medical intervention, which has a chance of either restoring perfect health or killing the patient. The concept of the time trade-off is another example of a problem that a patient is often expected 

34 FIGURE 3-1 Asthma Action Plan from the National Heart, Lung, and Blood Institute. SOURCE: Apter, 2013. 

DEMANDS, ASSUMPTIONS, AND CHALLENGES FOR CONSUMERS 35 to understand and solve. It is important to remember, Apter emphasized, that this is all in the context that more than 50 percent of Americans have no more than basic numeracy skills. It can be difficult for many people to understand these concepts and use them in making health care decisions. To conduct research into the numeracy skills of asthma patients and whether it affected their asthma care, Apter and colleagues developed the Asthma Numeracy Questionnaire, a four-question survey on common concepts in the national asthma guidelines, and administered the survey to patients in English or Spanish (see Box 3-2) (Apter et al., 2006). The first question was the prednisone dosage question given previously. When asked the question of how many 5 milligram tablets to take to equal 30 milligrams of prednisone, 84 percent of patients with moderate to severe asthma recruited from a clinic answered correctly. That means, however, that 16 percent did not understand those instructions. The next question was about risk and percentage. Steroids are often prescribed in asthma care and there is a risk that a patient could get osteoporosis from taking steroids for a prolonged time. Patients were asked to give an explanation of a 1 percent chance of developing osteoporosis. Only 38 percent of patients could correctly explain the concept of 1 percent; most did not understand. The final two questions covered peak flow meter readings, often used in asthma management, Apter explained. First, patients were asked to determine 50 percent of their personal best peak flow meter reading if their personal best is 400 liters. Nearly three-quarters of patients were able to answer correctly, but that means that more than a quarter of patients were not. Second, patients were asked a more complicated peak flow question using percentages to determine a range of readings that indicated a “Worry Zone.” Only 20 percent of patients were able to correctly identify the range of readings that equaled 50 to 80 percent of the given peak flow reading, Apter said. When the survey results were compared with the participants’ scores on the Short Test of Functional Health Literacy in Adults (STOFHLA), there was only a moderate correlation between the two. Apter said there could be a number of reasons there is not greater correlation. It could be that numeracy is very different from reading comprehension, or that the test characteristics are different, or that the numeracy questions were in the con- text of asthma and asked of asthma patients. A more important result of the research was the finding that low scores on the numeracy questions were associated with more emergency department visits and hospitalizations for asthma. This association did not appear to be present with the STOFHLA. Apter said that as she monitored patients over time as part of another research project, a higher numeracy score was associated with better asthma control and quality of life. The research showed that lower numeracy skills were associated with poorer health. This is an important link, Apter said, 

36 HEALTH LITERACY AND NUMERACY BOX 3-2 Asthma Numeracy Questionnaire (ANQ) ANQ Question 1 Here are some examples of statements or questions patients might hear in a doctor’s office. 1. Your doctor asks you to take 30 mg of prednisone every day for a week. The pharmacist gives you a bottle of 5 mg tablets. How many pills should you take each day? ANQ Question 2 If a patient has a 1% chance of developing osteoporosis or bone loss, that means: a. Out of 1,000 patients, one will develop bone loss b. Out of 100 patients, one will develop bone loss c. Out of 10 patients, one will develop bone loss d. Out of 5 patients, one will develop bone loss e. The patient will develop bone loss f. The patient will never develop bone loss ANQ Question 3 You have a peak flow meter. Your Danger or Red Zone is 50% of your best reading. Your best reading is 400 L/min. What is your Danger Zone? ANQ Question 4 You are told the Green Zone (the OK zone) is a reading between 80% and 100% of your best reading. Your Worry Zone is between 50% and 80% of your best read- ing. Your best reading is 400 L/min. When are your readings in the Worry Zone? a. Between 300 and 400 L/min b. Between 200 and 320 L/min c. Between 200 and 300 L/min d. Between 240 and 320 L/min e. Between 100 and 300 L/min SOURCE: Adapted from Apter, 2013. 

DEMANDS, ASSUMPTIONS, AND CHALLENGES FOR CONSUMERS 37 and leads to the question of what should be done to improve low numeracy skills. There are things that could be done at a societal level, such as ensur- ing adequate and equal educational opportunities for all, and at the patient level, such as confirming patient understanding. Apter said she would focus on what clinicians can do to overcome the negative consequences of low numeracy skills. Apter suggested that clinicians should focus their efforts in two areas— first to decrease the demand on the patients and second to increase clini- cian communication skills. Apter and colleagues developed a matrix (see Figure 3-2) as a guide to decreasing the numerical demand on patients. The columns list numerical concepts arranged in order of difficulty, from simple operations such as recognizing numbers to complex operations such as determining risk according to the classifications described by Golbeck and colleagues (2005). The rows display the level of mastery required in Interpret Problem-solving and inferring the mathematical concepts to be applied Estimation of error, uncertainty, variability FIGURE 3-2 A matrix for simplifying patient–provider communication. SOURCE: Apter, 2013. 

38 HEALTH LITERACY AND NUMERACY the communication. Descriptive information is the easiest to understand, followed by interpretation and then, finally, decision making. Apter hypothesized that determining where a piece of information fits into the matrix and then working to simplify the information so that it would move up and to the left on the matrix would make the informa- tion easier for the patient to understand. For example, using the issue of the number of 5 milligram prednisone tablets to take to achieve a 30 mil- ligram dose, the clinician could instead instruct the patient to take six pills in the morning, thereby moving the communication up and to the left on the matrix. The style and content of the instruction would move from the “problem-solving” row to the “reading numbers” row. Instructions given in this way would place lower numerical demands on the patient. Another example of simplifying the communication is to tell a patient to lose a cer- tain number of pounds rather than a percentage of body weight. This would move the communication up and to the left on the matrix. For tasks such as monitoring information over time, which includes understanding trends, the clinician may be able to simplify the communication by graphing the information for the patient. Developing different ways of framing the information is another way to decrease the demands on the patient, Apter said. For example, compar- ing the 5 milligram tablets of prednisone to nickels may be a helpful way to give context to the patient. However, it is important that the framing be appropriate. Both patients and physicians will interpret information differ- ently depending on how it is stated. People may make different decisions if told they have a 70 percent chance of death if given certain chemotherapy versus a 30 percent chance of living. Visual aids such as graphs and charts can also help decrease the demands on the patient, but it is important to use the appropriate graph at the appropriate time. Apter said that clinicians can also focus on improving their commu- nication skills. She cited an article by Peters and colleagues (2007) that stressed the need to remove extraneous information and give patients only the most essential information. Using plain language when communicat- ing with patients is also very important, Apter said, as well as engaging in “teach-back” with patients to confirm their understanding of what has been said. A patient advocate can also be helpful in patient–provider com- munication. A patient advocate is someone close to the patient, such as a family member, who can accompany the patient to a medical visit and serve as a way to check that the patient and provider are communicating effectively. Although teach-back and discussions with an advocate can be time consuming for the clinician, there are ways to delegate some of the process to other staff in the practice. Another literacy skill that is becoming increasingly important is electronic literacy. Technological resources can be daunting for many people, but they also have great potential for providing 

DEMANDS, ASSUMPTIONS, AND CHALLENGES FOR CONSUMERS 39 yet another format for presenting health information, particularly numeri- cal information. In closing, Apter said there are significant unrecognized numeracy demands for adults with chronic diseases. Poor numeracy is associated with poor health outcomes, and limited numeracy can impair the ability to communicate and understand health information and to participate in shared decision making. It is essential to equalize and enhance educational opportunities, but clinicians must also understand and account for lim- ited educational opportunities and limited numeracy in patients to ensure adequate access to health care and effective communication, Apter said. DISCUSSION Moderator: Paul Schyve Steven Rush, roundtable member, agreed with Apter’s assertion that electronic literacy is important and becoming more so because people are increasingly expected to conduct health-related tasks online. Rush noted that Quincy had done research on health insurance literacy and asked if she could give a brief overview of her work on that topic. Quincy said she had presented some of the same research at an earlier Institute of Medicine workshop (IOM, 2012) and at that time had noted a need for a better way to measure health insurance literacy. There are good measures for health lit- eracy, but these measures do not capture the challenges in purchasing health insurance. Since that 2011 meeting, the American Institutes for Research (AIR) has begun working on measures of health insurance literacy; how- ever, numeracy may not be broken out as a separate measure. Quincy said she would prefer a scoring system that could identify which component of the score was related to numeracy, literacy, and other skills. Rush commented that AIR is using an approach similar to that taken by the National Assessment of Adult Literacy (NAAL). Furthermore, some of the AIR work is related to the uniform glossary produced by the U.S. Department of Health and Human Services and the U.S. Department of Labor, which attempted to simplify terms such as copay, deductible, and coinsurance. Rush said that the Consumers Union also had produced a good usability test for the definitions of terms produced by the National Association of Insurance Commissioners. These definitions were ultimately moved into the uniform glossary. Quincy replied that the glossary was produced as a tool to accompany a standardized method of explaining insurance policies and net summaries of benefits and coverage. The glossary is written in plain language and examples are included in the text. Consumer testing showed, however, that 

40 HEALTH LITERACY AND NUMERACY because it is a standalone product and is not context sensitive, most people said they were unlikely to seek out the glossary if they were having trouble understanding an insurance policy or explanation of benefits. The glos- sary can be very helpful, Quincy concluded, but it cannot be assumed that consumers will always seek out helpful information. It may be necessary to provide the information to the consumer in the policy to ensure that it is reaching them. Rima Rudd, roundtable member, expressed a cautionary note about emphasizing measuring people’s skills or lack of skills. Skill levels are already known through the national assessment tools. She noted that mea- suring a problem again and again does not help solve the problem and that she is encouraged by an emphasis on actionable items and testing possible solutions to the problem of low numeracy. Benard Dreyer, roundtable member, asked what Quincy had learned through her research about the confusion surrounding the difference in cost between in-network and out-of-network providers. Quincy answered that the consumer testing conducted by her organization did not delve too deeply into that topic. She noted, however, that based on other research and the experience of advocates, the difference between being in network and out of network is a source of confusion for consumers. The primary source of confusion is a lack of understanding of the financial implications of being in network versus out of network. People understand that going out of network will be more expensive, but it is difficult to determine how much more expensive. One component of the ACA that has yet to be implemented is to work to improve measures of network adequacy. A number of people are working on that and it will likely include ways to capture the influence of time, distance, geography, and other measures of whether a network meets consumer needs. Quincy believes that measures of network adequacy could be taken further and include not only how broad or narrow a network of physicians is, but also how financially accessible that network is and whether the physicians have the capacity to accept new patients. These are dimensions of a network that consumers need to know. Dreyer commented that his medical practice has been trying to design a better asthma action plan. He said the example from Apter’s presentation is confusing for parents, particularly for those who do not speak English or have low literacy skills. His practice has made the decision to eliminate peak flow measurements from its asthma action plan because it is so con- fusing. Originally he was against this idea, but its elimination has helped parents understand the plan more easily by reducing the cognitive load. Apter agreed and said she used it in the presentation because it is a good example of something that is commonly used, but difficult for patients to understand. Patrick McGarry, roundtable member, noted the American Heart Asso- 

DEMANDS, ASSUMPTIONS, AND CHALLENGES FOR CONSUMERS 41 ciation’s Know Your Numbers campaign, which asks people to track their blood sugar, blood pressure, blood cholesterol, and other various health measures. He asked Apter if she was aware of any research that examines whether tracking and knowing measures like those improves an individual’s health. Apter answered that she was not aware of any research into the efficacy of tracking such information. Quincy pointed out that many times a consumer information tool is created and distributed without any follow- up testing of its effectiveness. Roundtable member Linda Harris commented that a key target popula- tion for health insurance under the ACA is healthy young men. She asked if there is any research on whether health literacy or numeracy may be a chal- lenge with this group. Quincy said the research does not address that topic specifically, but that encouraging people to obtain health insurance was a goal of her organization as well. Quincy said that from her understanding of the available research, she believes that there is a motivational challenge for young men. They are not necessarily motivated by arguments related to health, but may be motivated by arguments related to the financial con- sequences of not having insurance coverage. Susan Pisano, roundtable member, asked if Apter has any experience using her decision matrix with medical students, pharmacy students, or nursing students and, if so, how it was received. Apter replied that she has discussed the concepts with residents and medical students, who received it respectfully, but she has not shown them the matrix. Rudd commented that she has used the matrix many times with public health students and that they have been enthusiastic about it because it is a useful tool. Rudd said she did not know whether any of them continued to use it in practice, but it has been received positively in an educational setting. Cindy Brach, another member of the roundtable, expressed interest in removing nonessential information as one way of bridging the gap between abilities and demands. She said that she and two colleagues, Michael Wolf and Sarah Shoemaker, have developed a patient education materials assess- ment tool, which is a tool that assesses whether materials are understand- able and actionable. Brach asked if there are any strategies to help people who are writing and designing patient information materials to determine what is not essential. Apter said she does not know if there is formal guid- ance, but she thinks nothing can replace a conversation between a patient and a provider that discusses patient understanding and priorities. She noted that with regard to electronic health records, for example, there is a place in the after-visit summary for providing individualized information to the patient. This may become a critical way to communicate pertinent information to the patient as providers and patients become more accus- tomed to electronic records. This would, however, require educating both providers and patients in its use, Apter stressed. 

42 HEALTH LITERACY AND NUMERACY Quincy said that on the health insurance side, the difficulty of deciding what information is essential and what is not is an important point. She said she does not know of any overarching strategy for making these judg- ments while designing materials, but well-designed consumer testing can reveal what is essential and what is not and guide the revision of materials. Lindsey Robinson, roundtable member, asked if Apter knew of any asthma action plan that included information on the impact of asthma medications on oral health. Apter answered that oral health in general is not considered enough in medical education and medical treatment, and is not generally mentioned in asthma treatment. She added that this is an issue because oral health is important for overall health and quality of life. Robinson agreed and noted that she was aware of several cases where chil- dren had severe tooth decay caused in part by their asthma medications. The children’s caregivers had not been made aware that these medications contribute to tooth decay. Apter said there is little in the research literature on the topic, although she has heard a number of anecdotes like Robinson’s and formal research needs to be done. Robinson asked Quincy if, in the course of her research on consumer understanding of health insurance, she had looked into consumer knowl- edge about dental insurance. Under the ACA many families will receive dental insurance for the first time, and it is confusing for both families and providers. Quincy said she has not engaged in research on dental insurance, but she is familiar with others’ research. People want dental coverage as part of their health insurance. It is a motivating factor even for those who are young and healthy and not otherwise interested in health insurance. The implementation of the ACA with regard to dental insurance has been con- fusing because it is offered as a standalone policy, and there are a number of questions about whether purchasers are eligible for tax credits or if dental insurance alone fulfills the individual mandate. This will likely continue to be an area of confusion for consumers, Quincy said. Roundtable member Margaret Loveland asked Apter what she meant during her presentation when she said that it is essential to equalize and enhance educational opportunities. Did she mean for children, consumers, or physicians? Apter said she was referring to educational opportunities in public schools. Her experience as a math teacher showed her that the math taught in schools, whether rich in resources or not, is not always the math people use in their daily lives. Apter said that research shows that health disparities are rooted in disparities in income and education. Darren DeWalt, roundtable member, commented that Quincy is per- forming a vital task in helping consumers understand health insurance, but that it is frustrating that health insurance products seem to continu- ally grow more complex. He believes this complexity is taxing everyone’s resources and increasing the difficulty for consumers and those who are 

DEMANDS, ASSUMPTIONS, AND CHALLENGES FOR CONSUMERS 43 trying to help them. DeWalt added that he, like Brach, is interested in the question of how to determine which information is essential and which is not. For example, Quincy asked in her presentation whether consumers need to know the total cost of treating breast cancer or just the cost to the consumer. As an example from Apter’s presentation, is it necessary for the patient to know the difference between a controlling medication versus a rescue medication for asthma? Perhaps, DeWalt said, the patient only needs to know that one is taken every day and one is only taken when symptoms appear. DeWalt added that asking consumers and patients what information is meaningful to them is the only way to know. Quincy said the state and federal insurance exchanges operating under the ACA provide a good research opportunity because they each display and present information to the consumer a little differently. She added that in her coverage example, it was important for the consumer to know the total cost of breast cancer treatment because that knowledge provided motivation to buy insurance. The total cost versus the cost to consumer provided important contextual information. Apter noted that it is important to remember that not every- body needs a simple explanation, and the provider must tailor information to the individual patient. She added that, as a physician, she believes it is important for patients to know the differences in their medications. Wilma Alvarado-Little, roundtable member, asked if there has been any discussion of whether providers could help patients determine whether a specialist is in network or out of network, for example, by reminding patients to check with their insurance companies when they receive a refer- ral. Quincy replied that she has not seen any research on that topic, but that it might be a good idea to add a reminder to check on a provider’s status on the referral slip. She did not think, however, that providers would want to take over that responsibility. Kim Parson, roundtable member, agreed that providers do not want to get into the details of a patient’s health insurance. She noted that her company, Humana, proactively contacts policy holders who are referred to out-of-network providers to offer the opportunity to switch to an in-network provider. Alvarado-Little commented that patients often trust their provider more than anyone else and may not trust the insurance company. Quincy agreed that it is important that information come from a trusted source or consumers will not pay attention to it. Par- son replied that insurance companies do not have the same relationship with a patient as a provider does, but that Humana finds it appropriate to provide that information to customers, and that the majority of the time the customer switches to an in-network provider. Laurie Francis, roundtable member, commented that a patient-centered medical home and a team approach are necessary to accomplish everything that the presenters and roundtable members are discussing. There is not 

44 HEALTH LITERACY AND NUMERACY enough time for a provider to handle treatment, prevention, patient educa- tion, and health insurance questions. Some of those things are better left to advocates, health coaches, and nurses, among others. She asked if the team approach is considered when working on how to best help patients. Apter answered that a team approach can be useful, but has its challenges. First, there may be no standard team for coordinating care of a chronic ill- ness. Second, communication is a challenge across multiple providers and practices. Heidi Silver-Pacuilla from the U.S. Department of Education said she was delighted that the roundtable had addressed the issue of adult numer- acy and literacy. She informed the roundtable and the audience about a new data source for research on the health literacy, numeracy, and digital literacy skills of adults—an Organisation for Economic Co-operation and Development study called the Program for International Adult Assessment Skills and Competencies (PIAAC).2 The study consists of nationally repre- sentative data from 24 countries in the first round and 9 more countries in later iterations. The first sample is not as large as the NAAL sample, but it will continue to grow as the study moves forward. The data will be available for public use and a number of tools will be available to assist researchers in analyzing the data. Silver-Pacuilla emphasized that people are not stuck at low levels of literacy and numeracy. She added that involve- ment in their own and their families’ health is an opportunity for people to learn new skills and new concepts. Her experience has shown that as people learn they become advocates for their families. John Gardenier, audience member, commented that the presenters had discussed numeracy with regard to medications and medical treatments, but what about exercise, diet, and lifestyle? Don’t patients need numeracy and literacy skills to understand their physician’s advice about those topics? Quincy and Apter both agreed that better health habits should be promoted systemwide. Helen Osborne, audience member, said that after hearing the morning’s presentations, she was excited and enthusiastic about possible solutions to the problem of low numeracy skills. She wondered if the challenges could be reframed to fit with the Apple store analogy offered earlier by Terry Davis. When health care tasks are deconstructed, everything relates to problem solving and decision making, she said, and it is exciting to think of new ways to approach these challenges. Audience member Bill Elwood noted that many of the lessons learned and challenges discussed by the morning’s presenters point to the need for basic research. What are the cognitive steps that people take when making 2 More information about the PIAAC can be found at http://www.oecd.org/site/piaac/ surveyofadultskills.htm (accessed October 29, 2013). 

DEMANDS, ASSUMPTIONS, AND CHALLENGES FOR CONSUMERS 45 decisions? How do people learn and increase their numeracy skills? Answer- ing questions about these types of basic human processes can advance health literacy research and improve people’s health. Jessica Ancker, a presenter scheduled for the afternoon session, noted that much of the morning’s presentations had been about costs and the difficulty of estimating medical costs. She drew the roundtable’s attention to a website, Fairhealth.org, which provides publicly available information on the costs of various procedures. Quincy pointed out that Fairhealth.org allows consumers to look up the Current Procedural Terminology (CPT) code for a procedure and find the usual and customary charge or the Medi- care charge for a specific area. This assumes, however, that an individual has the skills to locate the CPT code and use the website. In addition, Quincy said, most consumers lack the ability to build what is called an “episode,” that is, to include all of the CPT codes involved in a procedure or medical treatment. The website also cannot answer the question of what a specific hospital will charge for a procedure, which is usually what the consumer needs to know, Quincy concluded. REFERENCES Apter, A. J. 2013. Numeracy in health care: A clinician’s perspective. Presentation at the Insti- tute of Medicine Workshop on Health Literacy and Numeracy, Washington, DC, July 18. Apter, A. J., J. Cheng, D. Small, I. M. Bennett, C. Albert, D. G. Fein, M. George, and S. Van Horne. 2006. Asthma numeracy skill and health literacy. Journal of Asthma 43(9):705-710. Golbeck, A. L., C. R. Ahlers-Schmidt, A. M. Paschal, and S. E. Dismuke. 2005. A definition and operational framework for health numeracy. American Journal of Preventive Medi- cine 29(4):375-376. IOM (Institute of Medicine). 2012. Facilitating state health exchange communication through the use of health literate practices: Workshop summary. Washington, DC: The National Academies Press. Peters, E., N. Dieckmann, A. Dixon, J. H. Hibbard, and C. K. Mertz. 2007. Less is more in presenting quality information to consumers. Medical Care Research and Review 64(2): 169-190.